A Look at Prognosis Awareness Versus Prognosis Acceptance
This phrase was suggested to me the other day with the explanation that there is a difference between the two AND that quality of life is improved when one moves from "Prognosis Awareness" to "Prognosis Acceptance." This concept intrigued me and so I turned to my first line of defense whenever interested in a subject, Google. Let me just say there are lots of good and bad things online and it has taken me some time to weed through some of the detritus in order to get to the good stuff; but after four (4) years of living with MBC as of 2021 when I'm writing this article, I have my go-tos pretty solid by now.
One of the first articles that came up was a peer-reviewed study posted on the National Institute of Health (NIH) website. Before you ask, yes, that's two good things - peer-reviewed and published by a reputable source. That article was based on a study where nearly 400 metastatic cancer patients were interviewed and the results collated and analyzed.
What does accurate prognosis awareness mean?
Results: "Accurate prognostic awareness was not associated with the likelihood of severe anxiety or depressive symptoms but significantly increased the likelihood of high self-perceived sense of burden to others and was associated with poorer QOL in participants' last year of life. Participants who knew and highly accepted their prognosis were significantly less likely to experience severe anxiety symptoms than those who were unaware of or knew their prognosis but had difficulty accepting it."1
Responding to my MBC diagnosis
Based on a variety of factors, including upbringing and birth order and personality and education and training, etc., I'm not really an anxious person. What I learned a long time ago in law school was to envision the worst possible thing that could happen, prepare for that, and all of the minor intermediary issues would be handled. And so, when I was told that the breast cancer we thought was stage IIb was actually stage IV and would kill me, the very first thing I did was make sure that my will and trust were updated. I went to the end and organized my death.
And now that that is taken care of, I can breathe and focus on now. There is peace as Jennifer O'Brien, the author of "The Hospice Doctor's Widow", talks about frequently when you don't have to think about the end or how it will go. By organizing, by planning, by putting a strategy in place, we are freed from that existential angst of something being undone. She even shares a free toolkit for starting the process of getting organized, which I highly recommend. I've also found a book on Amazon called "I'm Dead, Now What," super helpful as a more robust tool and it's bound, so a little more likely to survive.
Planning for the eventuality of death
In my view, planning for the eventuality of death is a tool in our toolbox. Just because we have a plan doesn't mean we've dealt with the emotions behind the need to have a plan in the first place. But, back to my personality, I am most comfortable in this planning stage, in getting my ducks in a row; once that happens, I can relax and the feelings are able to rise to the surface where I'd stuffed them.
Hey, it's my process, no judging.
Processing the prognosis before planning
Others may feel more comfortable in feeling all the feelings before they are able to create the plan, needing to get those difficult emotions (or at least the most intense ones) out of the way before they are able to think. I don't fully understand this reaction because it is foreign to me, but I see it often enough.
I think the point I'm trying to make is that whatever the process, the transition from understanding or knowing a prognosis (head knowledge) to truly accepting it (heart knowledge) is something that everyone will do a little differently. The important part is that we all do it because we can't focus on or enjoy the NOW until we deal with what is coming.
Do you have a safe space where others understand what you are going through?